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New Diagnosis of MAC/MAI & I'm scared

MAC & Bronchiectasis | Last Active: Oct 13, 2022 | Replies (349)

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@windwalker

@sounder27 Hi there! Did you have to have instruction in person by a healthcare worker to use your Arikayce? Is it different from nebulizing any other med? Thnx!

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Replies to "@sounder27 Hi there! Did you have to have instruction in person by a healthcare worker to..."

Terri, I am thinking because it is a clinical trial (I had to be accepted and fill out paperwork) that is why someone has to come to my house. My kids were (and still are) all over that worrying that someone would accidentally bring the virus here. Irene

Windwalker. The nebulizer machine for the amikacin is different. A little sleeker and smaller. There is no tube attached, but rather the 5 piece assembled “pipe” attaches to the nebulizer with a cord and attachment piece that has an electrical conducting element. The pipe itself has to be specifically assembled for every use. I feel a bit like the caterpillar in Alice in wonderland while I’m puffing away, inhaling, there is a mist that resembles smoke that swirls around as I inhale and exhale into the pipe. There is a bowl of sorts into which the amikacin is poured and then covered with a twist on top. Once the pipe is ready for use the sleek little machine is turned on with the press of a button. It is timed for about 20 minutes or so of inhalation and shuts off automatically when the liquid has been inhaled. After the inhalation process, the pipe is disconnected from the machine and you need to take it apart and carefully wipe each piece before bringing them to the sink to clean. You will need a medium sized bowl that you fill with a few drops of clear dishwashing liquid and hot soapy water. Carefully rinse each piece and put in the soapy bowl for about 5 minutes. Next, rinse each piece again and put them into a pot of boiling distilled water used only for them. Boil for 5 or 6 minutes. Now place each piece on a special lint free towel set on a drying mat and cover with the rest of the towel. Now your pipe is cleaned and ready to assemble for the next use. The metal element piece is replaced with a new one each week and the entire pipe is replaced each month. Those pieces are included in the packaging. The whole ‘shabang’ is delivered monthly in a refrigerated cooler and the packaging needs to be sent back via fedex. The meds have to be refrigerated immediately upon delivery.
I think I included everything in the process. It took me about a week to really learn the order of assembling the pipe and to remember to take the vial of amikacin out of the fridge an hour before use. It has to be room temperature before use. I hope this helps. It is easy for me now and I don’t think about it too much.